Unsure and Worried

Hi my name is Traci, I am 22 and a full time student in Florida. I am a proud mom, but a single one. My family is ultra supportive and more helpful than I could ever wish. I have been reading you'als forms for months now and I finally feel comfortable enough to talk.

I have had chronic GI problems since birth. I have had everything from bypass due to such severe impaction's to weeks without any bowel movement. I have tried every medication on the market. From herbal supplements to GoLytely. I finally found a DR who referred me to a colon/rectal surgeon. I underwent a sitz marker test, failed; defography, completely failed...absolutely nothing moved during the study and then still didn't move for about a week; I had EMG monomitry, failed...there was no sensation what-so-ever; and I had the balloon manomitry, failed...they actually inflated the balloon to full to find any sensation that it popped not once but three times and finally they decided that my bowel just exceeded the threshold for the balloon. I also had a barium enema study, they found that the bowel itself was okay and that there was no obstructions.

That DR decided that I needed to try biofeedback, this was because at the time I was having difficulty's with my insurance company. He also said that when/if the biofeedback failed he would need to perform a coloectomy. I went back to my DR and he referred me to the most WONDERFUL DR in the CC in Weston, FL.

I went for my appointment assuming he would agree with the first surgeon but to my surprise he completely disagreed. He and his staff were wonderful. He said that biofeedback, for my condition, was a complete waste of time. He said that because of my specific bowel troubles he believes that my problem is a colon/rectal/anal emptying disorder. He said until they invent a "pass-maker" for my anus. He said that because even drinking the GoLytley only works on occasion he wants to perform a colostomy.

I am supposed to sech. it for the start of Dec. but I have great reservations. I have looked online and found photos but they all seem to be the worst of situations. I am young and active and I don't want this colostomy to slow me down. I have never truly gotten to experience what most people my age do. Dating, romance, tighter fight clothing. I have worked very hard to lose weight and finally at a good point that I feel comfortable with who I am. I am so worried that having this colostomy will be a HUGE red flag to any perceptive date. Will I be forced to wear sweat pants and baggy clothing to hide it? I live in FL, its HOT, I mean its the middle of OCT and its in the 90's, I like tank tops and such I don't want to have to wear baggy shirts.

The surgeon said that if this works Great, if it doesn't then I can reverse it or have the coloectmy. Any advise is so hugely appreciated.

Is the doctor talking about reversing the colostomy or would it be permanent? I have had my colon completely removed because of ulcerative colitis and am scheduled for a reversal next week. That means no more ileostomy bag after 7 months. I had my surgeries at CC in Weston and have a wonderful, thoughtful doctor- Dr. Weiss. He is very conscious of every move he makes and doesn't take risks or perform unnecessary surgery.

I have been able to live my life with the bag- I work, have two busy children and am married. You can live with a ostomy bag and many young people do. I will tell you it does take some time to get used to it. I live in Florida too- South FLorida and I spent the summer in the pool. I am not as young as you and don't date anymore since I am married. But-- I hope singles out there will chime in and discuss how living with an ostomy bag does not mean the end of life.

I wish you the best.

Jackie, 43Pancolitis, DX October 06Lexapro, Synthroid, Protonix- NO MORE PRED!!!

Surgery March 13th- Total ColectomyJpouch surgery to be done in 3 stepsStep 2- June 23rdStep 3- TBA

Traci,I live in Florida, too, on the west coast, and have a permanent ileostomy due to Crohn's. I wear a tankini bathing suit and regular warm weather clothes, and nobody can tell that I have an ostomy. I know, because people tell me that after I've shared my story with them.

I'm very active, too. I work 4 days a week, go to the gym after work, swim in the ocean, go to waterparks, camp, travel...you name it... and my ostomy has never slowed me down. In fact, now that I'm not sick anymore, I have so much MORE energy than before, so I'm actually more active now!

I'm also romantic quite often with my husband, and he doesn't even notice or care that it's there. I like to wear sexy lingerie that covers my stomach area, but I do that for me, not him.

Best of luck with your decision, and please continue to ask us any questions you may have. We're here to help!

CeciliaDx'd Crohn's in '99 at age 28. Proctocolectomy and ileostomy in '06.Disease-free and medicine-free since surgery and very thankful to be healthy again.

Traci, my name is Tracy too. Did you get dx with colonic inertia too? Because I am in the same boat as you. I have colonic inertia and can not poop normally. My rectum does not work. I have had 2 doctors suggest a total colectomy, but I refuse to do that because I can't poop water, any stool consistency, and can barely even pass gas. But my doctor said I can't get a colostomy because my colon does not work..that I will have to get an ileostomy instead. Is that what you will have done?

Thank you all for your kind words. The DR thinks that the colostomy is a good first step becuase he is not 100% sure that it is really the colon that is the root of my evils but he thinks its the acutal anal muscle. He said that if it works great, if not I can eaither reverse it or proceed to the colectomy.

I do have another question for you all, I live about 4 hours away from Weston, if any of you have had the surgery (colostomy) can you tell me first how long should I expect to be in the hospital. The DR wants to do it lapor. so thats good. Secondly, how much pain will I be in for the trip back home, I wont be driving myself but I dont want my family worried. Also how long until you felt good enough to go back to work even for short periods of time?

4-7 days is what they say, but its usually about 4, unless you have a complication or something. I was gonna get out at 5, then spikeda random fever, and ended up in there for 6.As for the pain, it wont feel good,lol. But you will have lots oflovely meds, morphine will be your friend!As for the ride home, i had my bottom sewn shut, so that was what hurt me the whole way home so im not sure about how my stomach felt, lol. I would take a pillow or something to hold against it, for bumps and stuff. And take a pain pill before you hit the road.UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!

-I have gone to find myself, if i get back before i return, keep me here-

Check the thread Total Colectomy; it has 9 strands at this point. Also, a question for you.....if you flunked the sitzmark transit test, I take it that the markers were all still in your colon at the end of 5 or 7 days. If they are scattered and not moving and have not moved out, I'm pretty sure that means colonic inertia (colon not working). That was not my issue so I'm not an expert on that but that is what I've learned from others.

If this is the case, I don't think a colostomy would work for you because that is fecal diversion out of the colon.

Are you sure your doc wasn't talking about an ileostomy, fecal diversion out of the small intestine?

Something for you to ask him.

You are young. I am 53 and had to get my permanent ileostomy when I was 51 due to severe injury of my colon and rectum (incurred during another surgery; I'll spare you of the details). However, since getting my ileostomy, I've been on 5 major cruises (one a world cruise) and I'm planning a 6th one to South America. The good ostomy products they have these days make it OK. Not the way we came into this world, but stuff happens to people. It took me about 7 months to adjust; mine wasn't a choice as I was going to die without it so that made it easier. But you would be fine. I have to admit I'm not dealing with the dating scene since the ostomy, not because of it, just life situation and being older. But I can tell you, if someone gets to know you over time and likes you, they aren't going to think less of you when you reveal that you have an ostomy because you are still you. If they do take off, then they were not worth it anyway. You have to view the dating thing that way to keep things good for you. Best of luck. Sincerely, Rosemary

Rosemary & SummerStorm: I had all 25 markers still viewable by the final x-ray. They were all bunched together just above the rectum. I had a surgen in Orlando who like Janie (I was reading her story) did not care about my problem he thought he knew what would fix e and was completely offended when I asked for a second oppion. My Dr. at the CC in Weston, sat me and my mother down explained in great detail why he believe the problem is not the colon but the muscle in the anus. His belief is that the colostomy can be reversed if it turns out to be the colon. I sat down with my gastro. today and he helped me finally choose the surgery.

He explained that because of the quality of life although I have lived with this all my life, it is quickly progressing to an unmanigable condition. He was wonderful and also sais that I should not fret the drive because I feel to comfortable with my DR in Weston.

You'll be fine for the drive home. As summerstorm said, you'll have pain meds to keep you comfortable, so you'll be feeling no pain!

Since you're young and like to wear form fitting clothes, the lower down on your abdomen they put the ostomy the better. Mine is low down, so I can wear low rise pants and tank tops without it showing. Since it's tucked down in my pants, nobody can tell it's there. I promise!

Take care,

CeciliaDx'd Crohn's in '99 at age 28. Proctocolectomy and ileostomy in '06.Disease-free and medicine-free since surgery and very thankful to be healthy again.

Oh, I see. With all the markers gathered just above the rectum, that would likely indicate colon is OK and it's just some issue with rectum, anal muscles, or pelvic floor muscles. Sounds like you got some knowledgeable docs (lucky you! So many of us didn't or don't and are still searching!)

Traci, my markers never made it anywhere near the rectum....so I definately have colonic inertia...but the outlet problem is my biggest nightmare. How do you poop? I use glycerin suppositories and manually disimpact the stool. It has become almost unmaneagable for me too. When are you having surgery? I wish you the best, Tracy

Cecilia: how low is low...I don't mean to sound crude but I am so unsure of everything...are we talking belly button or something different. Also, is it okay to tuck the bag thingy into jeans or am i bound to eleastic waists...

Tracy: Love the name! ;) Currently I am drinking at least halft a container of GoLyltey (that giant jug you take prior to colonoscopys) every day. Every now and then I try some Magnesium Citrate, good taste but almost always results in just cramps and no poo. The suppositories only work occasionally.

Im gonna answer the jeans questions, you can tuck it into them. You can wear your normal clothes. I put my bag in my underwear, then fold the tail up under my underwear too.UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!

-I have gone to find myself, if i get back before i return, keep me here-

Traci,Low would be below the belly button and over to the left a few inches.

You can absolutely wear normal clothes and tuck the bag into jeans. I don't own any clothes with an elastic waistband, except for my workout pants and pajama pants, which only come that way.

For me, the bag is pretty much empty and flat during the day, and it mostly fills up at night while I'm sleeping. If it does fill up some during the day, I just empty it in the bathroom. With the velro closure at the end of the bag, it takes all of 5 seconds to empty, so it's no problem to do that.

Hope that helps!

CeciliaDx'd Crohn's in '99 at age 28. Proctocolectomy and ileostomy in '06.Disease-free and medicine-free since surgery and very thankful to be healthy again.